Taking action and making an impact

A message from the National Director, Florence Boulton

This week and next, many of our families are feeling a mix of emotions, as they send their children and young people back to nursery, school, college and university.  We have heard from you that although many of you are excited at the prospect of ‘normality’ returning, you feel fearful and uncertain about what will happen next in the course of the pandemic. It is also important for us to remember that many people in the Duchenne community continue to shield at home due to heightened risks from COVID-19.

Whatever your situation, please remember we are here for you and will continue to provide support for all our families in the forthcoming weeks and months. 

The end of an era

This week, our Community Fundraising & Support team led the final of the 25 lockdown support webinars, an amazing session with Marion Main from the world-renowned Great Ormond Street Hospital.

I shared in Lynnette’s mixed feelings that night, having truly worked so hard in setting up and running this stream of our support during the Summer, the pride we feel is tinged with sadness that it truly is the end of an era.

The webinars reached hundreds of Duchenne families, covering important topics from mental health to adult and children’s physio to relaxation and how to manage your online appointments. We’ve had sessions for the young people with Duchenne, sessions with OTs, the lived experiences of adults. Thank you to my amazing team for devising, creating and executing this incredible stream of support and to all the experts who generously gave their time to help make these sessions so powerful. 

The next step for us is to measure the impact of the webinars. This will help us to get support for future projects. We are fortunate to have the help and guidance of a wonderful volunteer, ‘Helen Impact’, an impact measurement expert who is working with Lynnette to evaluate the impact of the webinars. If you attended any of our 25 webinars, please take a moment to fill in this questionnaire, thank you.

Remembering Mithun and Daniel

This week, we were saddened to hear of the passing of two very special people in the Duchenne community.

Mithun Soul was an active member of the Takin’ Charge project, steered by Janet Hoskin and Celine Barry. Over the past 10 years Mithun had supported our events, from travelling to London to lobby Parliament to regularly attending our conferences. He will be missed by all who knew him and we pass our condolences to his family during this difficult time. 

Recently, Daniel Miller had joined our volunteer team as a contributor, sharing his talent for writing through articles, photos and blogs. He had a love of history and travel and told us that the ability to share his writing with others meant alot to him. Daniel was a lover of life, made the most of every opportunity, and lived his life to the fullest. We offer our sympathy to his family and wish to thank them for his contributions to the Duchenne community. 

The unsung heroes

Here at Action Duchenne we have worked exceptionally hard to ignite our volunteers, building the team and setting them to work on vital tasks, in particular over lock-down when the demand on our staff team rose exponentially.  

I would like to take this opportunity to thank some important members of our volunteering team who have donated their time and energy to helping us; John Miller, Maggie Gordon, Fiona Thomas, Lizzie Deeble, David Taylor, Graham Cloke, Gemma Stunt, Ashley Lawmon, Kieron Sales, Chantal Palmer, St John Rowntree, Helen ‘Impact’ Campbell, Bryan Purdue, Adeline Perrot, Annabel Welsh, the Carr Ka Massa team. 

Thank you to the team who sat online for a full day, changing links and fixing our website; Jessica Breeze, Paul Magness, Amy Bumford, Alice Reeve and Mema Stamataki. 

I have developed the support of our wonderful Patrons, sharing our successes, aims and impact with them. We have seen messages of support from both Martin Bashir and Helena Bonham Carter in recent months, and I had a delightful call with Harry Hill this week. He is fully supportive of our projects, campaigns and strategy, sharing our objective to continue increasing our collaborative work with the Genetic Alliance, DFSG, DMD Pathfinders, MDUK, Duchenne UK and other international patient organisations.  

My heartfelt thanks also go to everyone who has, and is continuing to make donations, renew membership, and send us messages of support to Action Duchenne, thank you! 

A jam-packed next few months

There is no stopping us now! After the crazy busy months of lock-down, we are laser focussed on our vision to achieve ‘a world where lives are no longer limited by Duchenne muscular dystrophy’. We have been planning hard during lock-down and have laid the foundations to fill the next few months with our key strategies; research, education, campaigning and support. 

The response to the virtual Conference has gone beyond our expectations, with some of the biggest names in the international Duchenne community confirmed to speak about the most fascinating topics. We have discovered that the virtual nature of the weekend event means that we are attracting registrations from the four corners of the globe!

We will have some important launches over the next few weeks, which will be announced to people who have registered, so please sign up today so you don’t miss out.

We are delighted to announce that we will be bringing you the ‘Science on Tour 2 – making impossible decisions’ project when it is safe to do so! We launched this campaign for the Aviva Community Fund and are busy planning the sessions and venues, so, watch this space! 

We will be announcing more exciting plans and projects which are currently in the pipeline as time goes on, so please do sign up to our newsletter to avoid missing important news on social media.

I wish you all the very best for the next few weeks. My team and I are here for you all, and I look forward to ‘meeting’ many of you at the virtual Conference on 14 and 15 November. 

Florence